PET result in and scared

Hi all

I finished treatment for a 1b1 cervical tumour plus 1 pelvic node in November. Initially booked for a radical hysterectomy, but the node moved me straight to chemorads. I had a bit of a rocky ride, in that I only had 4 of the 5 chemos due to low wbc and then after a blood transfusion my bloods all went loopy and my haemoglobin dropped to 60. Because of the anaemia my brachy was delayed by a couple of weeks and my haemoglobin was still lower than the 120 they like when I had it - which makes me think the brachy might not have been as effective as it should.

My pre brachy MRI was clear with NED and the surgeon placing the brachy rods reported NED. I was due to have an MRI 12 weeks post treatment, but because my pre treatment/staging MRI hadn’t picked up the lymph node and it was only found on a “let’s be certain, might as well use the new mobile PET” scan, I asked if I could have a PET this time round, instead of an MRI. I got the result today and apparently a small area on the lip of my cervix lit up, it wouldn’t have shown up on an MRI. My consultant says he’s not pushing the panic button yet, but that I will be called in for either an EUA and biopsies, or a second scan. He said it could be activity from the rads, but they need to check it’s not residual disease. If it is residual disease I’ll need a simple hysterectomy.

I know this isn’t too awful, but I was hoping to come away today ready to plan the next three months, and due to go back to work on Monday. Now I feel like I’m back at the start again. Has anyone else had similar? It seems unusual to have the chemorads and then surgery…I know I’m jumping the gun here. I’m also confused as my consultant keeps trying to reassure me that there was NED on the MRI 4 months ago, but then he’s also telling me an MRI wouldn’t have alerted them to this unusual activity still going on in my cervix.

Feeling rather lost and very scared.

Anne x

Hi 

I have no experience in this but sending a hug to you 

i haven't heard of an hysterectomy after having chemo rads maybe Someone who  as experienced this  will be a long with some advice 

hope it is just from the rads 

onwards and upwards 

love Michelle xx 

Thanks Michelle. I get the impression it's unusual to have a PET scan as the first 3 month check, because they often throw up anomalies that then need further investigation - I can't remember reading about anyone having it rather than the MRI...although I'm still hoping someone will jump in with a similar experience.

It's so hard not to panic though whenever there's a glitch. Many thanks for the virtual hug...much needed.

Anne x

I finished treatment in October and had a PET in November. I'm not sure why, as I see most have an MRI. Im going for my second scan this week and I'm only getting a CT with dye or whatever. I'm not to happy about that! I'd rather have PET or MRI. 

I too only received 4 chemos out of my 6 I was scheduled for. I reacted quite poorly to chemo. 

Hi Anne I had a hyster after radio. Recovery was a bit slow but I got there. So glad they cut it out in the end. They did wait 6 months after brachy to do it though due to continual activity from radio. I got back to work 6 weeks after surgery